There’s No Cure For Her Disease. But This Girl Says She’s Ready To Meet Jesus

The Truly Living Girl

Parents of children inevitably find themselves discussing the topic of Heaven with their little one at some point. Oftentimes these conversations are sweet, and spring from an innocent curiosity about death. Other times they can be difficult, following more tragic circumstances, such as the loss of a family member or a pet. But when Michelle and Steve found themselves in the midst of this discussion with their young daughter, Julianna, it was for the most heartbreaking reason of all.

Credit: Capturing Grace Photography

You see, little Julianna suffers from a severe neuromuscular disease that will eventually kill her and for which there is no cure. Her muscles grow continually weaker. She can no longer walk or hold toys or even to chew. The disease causes respiratory failure, so that even the smallest cold is a full-blown case of pneumonia for Julianna. The disease caused her to spend most of her fourth year life in the hospital, where she spent weeks at a time struggling to just breathe.

Credit: Julianna Yuri Blog

It was around this time that Michelle started sharing Julianna’s journey, along with some of the touching conversations they have had as a result. While the disease leaves Julianna’s body fragile and weak, her mind and spirit are stronger than ever. The conversations she has reveals a beautiful soul trapped in a body that, sadly, just can’t keep up.

Credit: Julianna Yuri Blog

After a year fraught with infections, medical procedures and numerous hospital stays, Julianna was sent home under hospice care. Her mom says the plan was to try it out, get more support at home and go to the hospital again if she got sick. But after a few months, and numerous conversations about Heaven, Julianna let her parents know she wanted Heaven rather than the hospital:

Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?

Julianna: not the hospital

Michelle: Even if that means that you will go to heaven if you stay home?

Julianna: Yes

Michelle: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.

Julianna: Don’t worry. God will take care of me.

Michelle: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.

Julianna: I understand.

Michelle: (crying) – I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.

Julianna: That’s OK. God will take care of me. He’s in my heart.

Credit: Julianna Yuri Blog

It was that conversation, and the fact that Michelle and Steve plan to honor her wishes, that sparked a controversy. There are those that feel the now 5-year-old Julianna is too young to make such a big decision. But those that are close to this precious girl see it differently. Her doctor completely agrees with her parents, saying,

“I have the utmost faith in her mother and father. They're phenomenal parents and have her best wishes at heart."

“You have to know what it's like to hold down a child and hear them scream so you can stick a tube down their nose. It's one thing to do that when you know you'll have a success at the end, but for Julianna, there is no success...I want her living and dying in her princess room, at home, surrounded by her family, not in the cold technology of a hospital. There is no cure for her. Every day is a blessing. Every day is a gift."

Credit: Julianna Yuri Blog

As for her parents, Michelle and Steve would love nothing more than to choose a long and happy life for Julianna -- if they could. But the disease and Julianna’s declining health has forced them to acknowledge they are not in control. As Michelle writes so eloquently in her blog:

“I have come a long way in accepting what I cannot change. The same God who made Julianna bright and lovely also allowed her to have a cruel disease. I believe that children who are asked to endure serious illness are given strength that the rest of us cannot understand. They are special. I think it’s God’s way of saying ‘I’ve got this. Just follow her lead.’So I follow.”

Credit: Julianna Yuri Blog

It has been a year since Julianna made her wishes known -- a year since she and her parents completely surrendered control to God. And they have been blessed with an infection-free, and therefore hospital-free year.

They still live with the knowledge that their precious girl will leave them sooner than they’d like. But, by His grace, they’ve already received more days than they’d ever expected. They live knowing that each day with Julianna is a blessing. That each beautiful conversation Michelle records with her sweet and wizened daughter is a gift from God.

Credit: Capturing Grace Photography

Michelle says,

“The headlines call her the ‘Dying Girl.’ We think she is the ‘Truly Living Girl.’ If you want to know what it means to truly live, look into her eyes and read my stories. You will find no better teacher than this girl.”